From the journals in December 2018, here’s some new reading for the first days of the new year. Enjoy!
Medicine Anthropology Theory (Open Access)
A holistic definition of ‘health’ remains difficult to operationalize, despite decades of attempts by medical anthropologists and the World Health Organization to do so. Anthropologists routinely reject dichotomous notions – belief vs. knowledge, wellness vs. health, mental vs. physical, environment vs. self – yet demands for physiological evidence of ‘health’ persist. In this article, I ask what evidence would sufficiently demonstrate health, and explore the possibility of measures that move beyond the physiological. Using ethnographic data collected in indigenous Maya communities in Belize and in immigrant communities in New York City, I argue that ecological heritage practices can provide a lens through which to locate and collect evidence of health, holistically defined. Developing a framework of ‘embodied ecological heritage’ (EEH), I discuss how communities and individuals communicate and measure health as part of everyday ecological activities, which they describe as ‘traditional’ or ‘heritage’ practices. Theorizing unexpected links and feedback loops, which cross temporal, spatial, and social boundaries, I assert that health is connected to practice through tangible, embodied experience and that ethnography thus provides powerful evidence to understand and define it.
Cancer-before-cancer: Mythologies of cancer in everyday life (open access)
Sara Marie Hebsgaard Offersen, Mette Bech Risør, Peter Vedsted, Rikke Sand Andersen
Approaching the presence of cancer in everyday life in terms of mythologies, the article examines what cancer is and how cancer-related potentialities are enacted and embodied in the context of contemporary regimes of anticipation. Based on ethnographic fieldwork in a suburban Danish middle-class community among people who were not immediately afflicted by cancer, we describe different and paradoxical cancer mythologies and show how they provide multiple ways of understanding, anticipating, and dealing with cancer in everyday life. Special attention is paid to the relation between biomedically informed notions of symptoms and bodily processes, and a ghostly and muted presence of cancer, particularly when people are faced with more tangible cancer worries. We explore how contemporary cancer disease-control strategies emphasising ‘symptom awareness’ interweave with and add to cancer mythologies. We suggest that these strategies also carry moral significance as directives (be aware of early signs of cancer and seek care in time), and create an unintended illusion of certainty that does not correspond with everyday embodied forms of uncertainty and ambiguity. We argue that paying attention to the continuous cultural configurations of cancer that exist ‘before cancer’ will increase understanding of how the public health construction of ‘cancer awareness’ relates to everyday health practices such as symptom experience and health care seeking.
Asking questions: Interviews and expertise in global health research (open access)
Household surveys are one of the primary methodological tools employed in global health research. In this paper, I try to gain insight into the production of global health knowledge by elaborating upon the process of data collection for such surveys. I do so by narrating a story of an impact evaluation in northern India, drawing attention to how data collectors, called ‘enumerators’, follow or disregard different aspects of the research protocol while conducting survey interviews. I pay close attention to how enumerators translate and ask questions, and how the ethical challenges they face affect their interactions with respondents. I use this analysis to draw parallels between the work of enumerators and global health researchers. I argue that researchers also acknowledge or ‘unknow’ different aspects of research practice in order to produce scientific evidence and claim expertise.
‘It gives you nothing but it takes away everything’: Photo ethnography as a lens onto the experiences of people who inject drugs in Puerto Rico (open access)
Roberto Abadie, Colleen Syron, Carmen Ana Davila, Angelica Rivera-Villegas
[excerpt] This essay offers insight into the material, social, and emotional worlds of intravenous drug use in rural Puerto Rico. Puerto Rico hosts one of the highest incidences of HIV infection in the United States (Centers for Disease Control and Prevention 2010), largely attributable to high rates of injection drug use. Visual ethnography is a powerful tool for exploring HIV risk behaviors and the materiality of injection drug use (Padilla et al. 2018; Moletsane et al. 2007), as well as the social and emotional worlds of people who use drugs (Clark-Ibáñez 2004; Madrigal et al. 2014). In contrast to photovoice, a method that can presume the empowerment of participants through the creation of images and that may require them to learn how to take high-quality pictures (Luttrell 2010), visual ethnography both involves participants in the creation of images to represent aspects of material, social, and emotional life and employs fieldwork methods to provide context for the meanings elicited by the pictures.
As part of a larger, two-year study of people who inject drugs in rural Puerto Rico (Abadie et al. 2016), we conducted extensive fieldwork to document the material practices that support intravenous drug use, shadowing participants as they hustled for drug money and partnered with other users to acquire and use drugs, and visiting shooting galleries and other settings where drugs are used. To further explore the material, social, and emotional dimensions of substance use we provided eighteen participants with disposable cameras and prompted them to take pictures of things that made them happy or sad, things they liked to do, and things they needed to inject drugs. In addition, all participants were invited to our office, where we took their portraits while they held hand-written signs with messages of their choosing. Participants were interviewed about the content of their photographs as well as the messages they chose for their portraits.
In the shadow of tomorrow: Ebola vaccine research in Liberia (open access)
[excerpt] This photo essay draws on images taken by the author in Liberia between August and December 2016, as part of an anthropological project exploring the perspectives of participants involved in Ebola vaccine research at the peak of the outbreak. In 2014, a US-Liberian collaboration resulted in the launch of Liberia’s first large-scale randomized Ebola vaccine clinical trial. Fifteen hundred people were rapidly recruited to participate in the trial and subsequently found to have compliance rates of 98 percent, an achievement that researchers had previously thought unimaginable. […] In this photo essay, I argue that for many Liberians, the decision to participate in Ebola vaccine clinical trials was embedded in historical and ongoing systems of exploitation, and was powerfully shaped by the fact that trial participation allowed them to obtain medical care and socioeconomic benefits that were otherwise out of reach. I suggest that photographs of the material and social contexts in which clinical trials unfold in Liberia and elsewhere can reveal important dynamics that are not taken into account by normative bioethics.
This article explores the politics and contingencies of care provided to survivors of sexual assault on a rape crisis hotline in the U.S.’s mid-Atlantic region. The support provided to survivors on the hotline represents a crisis of care, one fomented by the victim services sector’s failure to address the limitations of a crisis-oriented paradigm or survivors’ chronic trauma. The tension between the survivor-centered model of the hotline and the mental health needs of clients represents a friction of utility—a misalignment between the care hotline advocates provide and the support survivors seek. The anonymous care and internal contradictions of the hotline also results in high rates of vicarious trauma for advocates. Given the polysemic dimensions of care exhibited on the hotline, the service represents a form of negative care, one that accounts for gaps in survivors’ care yet still fails to empower proactive means of recovery.
This article draws on ethnographic research on the implementation of Vermont’s 2013 medical aid-in-dying (AID) law to explore a fundamental paradox: While public discourse characterizes AID as a mechanism for achieving an individually controlled autonomous death, the medico–legal framework that organizes it enlists social support and cultivates dependencies. Therefore, while patients pursuing AID may avoid certain types of dependency—such as those involved in bodily care—the process requires them to affirm and strengthen other bureaucratic, material, and affective forms. By tracing the social phenomenology of several AID deaths, I illustrate how AID results in distinctive forms of sociality and dependency that require terminally ill people and caregivers to embrace a collaborative stance toward choreographing death. I argue that assisted dying offers an opportunity to resist dominant U.S. cultural narratives that view dependency in purely negative terms and reimagine the relationships between disability, dependency, and care at the end of life.
Tourism Labor, Embodied Suffering, and the Deportation Regime in the Dominican Republic
Mark Padilla, José Félix Colón-Burgos, Nelson Varas-Díaz. Armando Matiz-Reyes, Caroline Mary Parker
In this article, we use syndemic theory to examine socio-structural factors that result in heightened vulnerability to HIV infection and drug addiction among Dominican deportees who survive post-deportation through informal tourism labor. Through an ongoing NIDA-funded ethnographic study of the syndemic of HIV and problematic drug use among men involved in tourism labor in the Dominican Republic, we argue that the legal and political–economic context of the global deportation regime contributes to structural vulnerabilities among deportees in the Dominican Republic, most of whom are men with histories of incarceration in the United States and/or Puerto Rico. While Dominican laws and institutional practices work conjointly with foreign policies to reconfigure non-criminal deportees as hardened criminals unworthy of full citizenship rights, the informal tourism economy provides one of the few absorption points for male deportee labor, linking the deportation regime directly to the Caribbean tourism industry.
The Binds of Global Health Partnership: Working out Working Together in Sierra Leone
Clare Herrick, Andrew Brooks
Global health partnerships (GHPs) are the conceptual cousin of partnerships in the development sphere. Since their emergence in the 1990s, the GHP mode of working and funding has mainly been applied to single-disease, vertical interventions. However, GHPs are increasingly being used to enact Health Systems Strengthening and to address the global health worker shortage. In contrast to other critical explorations of GHPs, we explore in this article how the fact, act, and aspiration of binding different actors together around the ideology and modes of partnership working produces the perpetual state of being in a bind. This is an original analytical framework drawing on research in Sierra Leone and London. We offer new insights into the ways in which GHPs function and are experienced, showing that along with the successes of partnership work, such arrangements are often and unavoidably tense, uncomfortable, and a source of frustration and angst.
While vernacular therapeutics had long been a topic of interest to many writing about medicine and healing in Africa, with a few exceptions most recent anthropological writings on medicine in Africa are focused on biomedicine. In this article, I trace this shift back to the turn of the millennium and the convergence of three events: the emergence of global health, the accession of the occult economies paradigm, and critiques of culturalism in medical anthropology. I argue that these three shifts led to research projects and priorities that looked different from those defined and undertaken as late as the late 1990s. While seeking to avoid the errors that could come with writing about vernacular therapeutic traditions in Africa as bounded comprehensive systems, I argue that there are empirical, political, and practical reasons why medical anthropologists may want to reconsider our collective research priorities.
Drawing on ethnographic fieldwork among black women, medical personnel, and activists in Brazil, this article highlights the implications of hierarchical medicalization. I show that the prioritization of particular forms of medicalized contraception for women located differentially in society enables different relations, political positions, and mobility. Denial of a tubal ligation in favor of modern reversible contraceptives, in a context of inequitable distribution, can perpetuate social stratification. This work contributes to literature exploring the complexity of medicalization and its relationship with society via reproduction.
When Diabetes Confronts HIV: Biological Sub-citizenship at a Public Hospital in Nairobi, Kenya
Edna Bosire, Emily Mendenhall, Gregory Barnabas Omondi, David Ndetei
This article investigates how international donor policies cultivate a form of biological sub-citizenship for those with diabetes in Kenya. We interviewed 100 patients at a public hospital clinic in Nairobi, half with a diabetes diagnosis. We focus on three vignettes that illustrate how our study participants differentially perceived and experienced living with and seeking treatment and care for diabetes compared to other conditions, with a special focus on HIV. We argue that biological sub-citizenship, where those with HIV have consistent and comprehensive free medical care and those with diabetes must pay out-of-pocket for testing and treatment, impedes diabetes testing and treatment. Once diagnosed, many are then systematically excluded from the health care system due to their own inability to pay. We argue that the systematic exclusion from international donor money creates a form of biological sub-citizenship based on neoliberal economic policies that undermine other public health protections, such as universal primary health care.
This article relates to a set of recent reports about the Canadian Border Services Agency’s (CBSA) use of commercial DNA ancestry tests to determine the nationality of detained migrants. While DNA tests are routinely used in many countries for the purposes of family reunification, these reports are particularly concerning. Not only do they imply a misunderstanding of the scope of genetics to shed light on legal and political phenomena such as nationality claims, but they also flag up important ethical problems regarding issues of consent and data privacy. In this article, the author clarifies the flawed logic behind using genetics to investigate nationality, outlines the ethical issues at stake and suggests amendments to existing norms in order to work towards more responsible practices in this area.
While organ transplantation is often highly successful in saving lives, it has created an illicit, but thriving, trade in human organs, including kidneys, livers, and corneas sourced from living bodies of the desperate poor. Based on challenging ethnographic fieldwork with seventy organ sellers, along with a group of recipients, brokers, and doctors, this article explains how organ trade results in violence, exploitation, and suffering against the vulnerable, who sell their live organs on the black market of Bangladesh. In opposition to allowing a “regulated organ market,” I argue that such a market is not a magic bullet that by itself would eliminate deception, coercion, and corruption that exist in the illegal trade of vital organs, nor would it ensure equity, rights, and justice to organ sellers. Instead, a regulated market would exacerbate, institutionalize, and normalize violence, exploitation, and suffering against impoverished populations. I, therefore, conclude that organ trade needs to be condemned, as there are alternative ways to resolve organ shortages. I suggest that government authorities must enact stringent laws, ensure ethical transparency, and encourage cadaveric donations to combat organ trafficking worldwide.
Drugs, Brains and Other Subalterns: Public Debate and the New Materialist Politics of Addiction
Suzanne Fraser, kylie valentine, Mats Ekendahl
Over the last few decades feminists, science and technology studies scholars and others have grappled with how to take materiality into account in understanding social practices, subjectivity and events. One key area for these debates has been drug use and addiction. At the same time, neuroscientific accounts of drug use and addiction have also arisen. This development has attracted criticism as simplistically reinstating material determinism. In this article we draw on 80 interviews with health professionals directly involved in drug-related public policy and service provision in three countries to identify the main ways the neuroscience of addiction (and thus the agency of the brain) is understood. We analyse these understandings using contemporary posthumanist theory to develop new options for conceptualizing matter in public responses to addiction. We close by calling for a new approach to addiction and the brain based on a process model of materiality and public debate.
Blood, Sweat, and Tears: Making Sense of Senses in Expert Nursing
Hanna Marie Ihlebæk
In this article, I draw on material from an ethnographic and phenomenological study of knowledge and professionalism among registered nurses working in a cancer unit at a Norwegian hospital. During the study, the use of the senses stood out as an important skill in nurses’ work with patients. The question to be investigated in this article is how the nurses acquire and use sensory knowledge in their clinical work. Building on a notion of knowledge as situated, embodied, and sensory, and learning as embedded in doing, this article contributes to and expands on the study of sensory knowledge in two respects. First, it foregrounds the processes and practices in which sensory knowledge is actually formed and used at a microlevel. Second, it highlights how an ethnographic and phenomenological exploration of the acquisition and use of sensory knowledge can contribute new insights into how expertise is cultivated in everyday clinical practice.
Prehistory of Aadhaar: Body, Law, and Technology as Postcolonial Assemblage (open access)
This article seeks to go beyond the binary of elite concerns over privacy versus subaltern desires for recognition to understand the huge Indian biometric project, Aadhaar. It offers a prehistory of Aadhaar, framed not in terms of rights and wrongs, important as they are, but as the most recent project in the shaping of modern social and political power through the technologically mediated intersection of the law and the body. Key moments of technopolitical reduction of the physical body—fingerprinting, DNA tests, brain scans, polygraphs, and truth serums—become turning points in a process that have joined personal identity with evidentiary truth to overcome centuries of judicial skepticism. Due to its combined technopolitical and biological foundations, the new national database commands a high degree of social and political confidence as reflected in the unplanned and unforeseen expansion of Aadhaar. In this emergent database society, intersections of law, body, and technoscience engender new human networks: temporary alliances among material forces, inanimate techniques, discourses, norms, and institutions, organized around the technologically mediated body. This article proposes in conclusion that, as a result of these developments, we are likely to see the generation of new and unverifiable conceptions of what we mean by and how we represent the ultimate human network, “society.”
Thickening Transregionalism: Historical Formations of Science, Technology, and Medicine in Southeast Asia (open access)
This article offers an overview of science and technology studies (STS) in Southeast Asia, focusing particularly on historical formations of science, technology, and medicine in the region, loosely defined, though research using social science approaches comes within its scope. I ask whether we are fashioning an “autonomous” history of science in Southeast Asia—and whether this would be enough. Perhaps we need to explore further “Southeast Asia as method,” a thought style heralded here though remaining, I hope, productively ambiguous. This review contributes primarily to the development of postcolonial intellectual history in Southeast Asia and secondarily to our understanding of the globalization and embedding of science, technology, and medicine.
Since the 1980s, a multiplicity of medical, social, and anthropological research has looked into different aspects of female genital cutting (FGC), with outcomes that are used as justifications for, or objections to, different forms of intervention on a global level. Yet there is limited research looking at local indigenous medical knowledge, and how potential health problems resulting from cutting are understood and treated by those who perform female circumcision as a profession. Based on ethnographic fieldwork in Fouta Toro, Senegal, this article shows that despite some medical professionals’ genuine commitment to stop FGC, their aesthetic notions of cleanliness and repulsion often still conform to dominant discourses and beliefs around purity. This article explores contradictory conceptions of female anatomy, purity, and olfactory differences between excised and unexcised women. It shows that instead of there being a one-dimensional opposition between different forms of knowledge (local/indigenous vs biomedical), as frequently implied in public health messages, people can assimilate seemingly contradictory viewpoints that correspond to their social identities, embodied manners, and the sensory and olfactory perceptions of their social environment.
The million frozen human embryos accumulated in IVF clinic freezers across the United States have become premier targets for saving by groups committed to repurposing reproductive remainders. Based on twenty-seven months (2008–2013) of ethnographic research within a Christian embryo adoption program and an embryo biobank for stem cell research, this article examines the motivations and practices involved in transforming leftover IVF embryos from a remaindered to a repurposed state. A focus on saving illuminates how moral discourses, economic logics, and biomedical issues conspire in shaping futures as well as modes of care in the present. Embryo repurposing programs use similar saving practices for different reasons, assume responsibility for repurposing IVF embryos, and strive to transform them into revalued forms for new futures. Fluctuating factors beyond the cryopreservation tank multiply rather than stabilize embryo potential. As a dynamic, open-ended process, saving requires programs to adjust strategies over time and wait.
Human microbial communities are bodies of microorganisms that reside in or on different body parts. Importantly, they have been found to affect human health. However, scientific research on human microbial communities has created new challenges for human subject recruitment. First, individuals are asked to collect samples of bodily substances that can be seen as repulsive (e.g. feces and urine). Second, because scientists want to understand how human microbial communities evolve over time, individuals are asked to commit to a regular sample collection for extended periods of time. A longitudinal qualitative study of the work of scientists, physicians, research staff, and study coordinators involved in a human microbiome research project has found that these actors can bypass some aspects of these recruitment and retention challenges through ‘tuning work’. Tuning work is a collaborative process where professionals agree to adjust their practices towards shared goals. Such professionals reconfigure their work practices, personal routines, and the study protocol in an effort to obviate cultural taboos against handling bodily substances. The burden of long-term participation provides fewer opportunities for tuning work for these professionals, however. As such, long-term commitment by human subjects remains a recruitment and retention obstacle.
Clinical forecasting: Towards a sociology of prognosis
Stefan Timmermans, Tanya Stivers
Much of our understanding of prognosis in clinical settings comes from end-of-life situations but prognostication is also a concern in chronic illnesses. Parents of children living with seizures wonder what the future holds: will the child outgrow their seizures, or will they remain a part of their child’s life? Based on video recordings of clinic consultations between pediatric neurologists and families, we examine how clinicians convey a child’s prognosis. We find that neurologists mainly communicate the prognosis indirectly through the goals they set for the child, the time frame of attaining these goals, and the uncertainties they highlight regarding the attainability of the goals. By modulating goals and erring on the side of optimism, clinicians maintain a collaborative relationship even if the prognosis turns increasingly dire.
Almost 1.7 million people in the settler colonial nation of Canada identify as Indigenous. Approximately 52 per cent of Indigenous peoples in Canada live in urban areas. In spite of high rates of urbanization, urban Indigenous peoples are overlooked in health care policy and services. Because of this, although health care services are more plentiful in cities as compared to rural areas, Indigenous people still report significant barriers to health care access in urban settings. This qualitative study, undertaken in Prince George, Canada, examines perceived barriers to health care access for urban Indigenous people in light of how colonialism impacts Indigenous peoples in their everyday lives. The three most frequently reported barriers to health care access on the part of the 65 participating health care providers and Indigenous clients of health care services are: substandard quality of care; long wait times; and experiences of racism and discrimination. These barriers, some of which are common complaints among the general population in Canada, are interpreted by Indigenous clients in unique ways rooted in experiences of discrimination and exclusion that stem from the settler colonial context of the nation. Through the lenses of cultural safety and ethical space – frameworks developed by international Indigenous scholars in efforts to better understand and operationalize relationships between Indigenous and non-Indigenous individuals and societies in the context of settler colonialism – this study offers an understanding of these barriers in light of the specific ways that colonialism intrudes into Indigenous clients’ access to care on an everyday basis.
Epistemic struggles: The role of advocacy in promoting epistemic justice and rights in mental health (open access)
Karen Newbigging, Julie Ridley
Advocacy for people using health and social care services is widely promoted but its theoretical foundation is under-developed and its impact poorly conceptualised. This paper explores the liberatory potential of independent advocacy, using Fricker’s concept of ‘epistemic injustice’ as a framework. People experiencing mental distress are particularly vulnerable to epistemic injustices as a consequence of deeply embedded social stigma resulting in a priori assumptions of irrationality and unreliability such that their knowledge is often discounted or downgraded. The mental health service user/survivor movement is at the forefront of validating personal experience and narrative to secure a different ontological and epistemological basis for mental distress. A foundational strand of this is advocacy to enable people to give voice to their experience. The case of independent mental health advocacy (IMHA) services under mental health legislation in England, provides an opportunity to critically examine whether advocacy can promote epistemic justice as a result of the legally sanctioned encounter between clinical assessment and subjective experience, pivoting on judgements about risk. This paper draws on empirical data from a national evaluation of IMHA services, which included 90 individual interviews with people subject to detention and three focus groups with mental health service users. Fricker’s concept of epistemic injustice is used as a lens to investigate how this type of advocacy might mitigate forms of epistemic injustice, and thereby promote greater social justice in mental health. The concept of epistemic injustice provides a valuable theoretical basis for understanding the worth of advocacy in addressing testimonial injustice as well as its relative weakness in overcoming hermeneutical injustice. The challenge of independent advocacy to the dominant discourse within mental health is considered and questions raised about the place of advocacy in modern democratic mental health systems.
Professionalism lapses and hierarchies: A qualitative analysis of medical students’ narrated acts of resistance
Malissa Kay Shaw, Charlotte E. Rees, Nina Bjerre Andersen, Lori Faye Black, Lynn V. Monrouxe
Resistance is classified as a reaction against confining social structures. During their education, medical students encounter traditional medical and interprofessional hierarchies as they learn to become doctors. These create a power disparity that may prevent their empowerment and ability to resist. Despite their subordinate position, students are not always powerless when encountering situations that contradict their ethical, moral, and professional understandings of appropriate medical practice – so called ‘professionalism dilemmas.’ A qualitative analysis of over 1500 narratives from interviews, focus groups, and questionnaires with 808 medical students in the UK and Australia highlights how students draw on a number of direct and indirect, verbal and bodily, instantaneous and delayed forms of resistance to counter the professionalism lapses of their seniors, which they face in everyday clinical and educational interactions. Within students’ narratives of resistance we come to see how they resist hegemonic practices and their reasons for doing so, such as to prevent patient and student abuse, promote hygienic practice, and uphold patient consent. Through these various acts of resistance (and their narration), medical students may promote the subtle transformation of the dominant medical structure either consciously or unconsciously. They may do this through reflecting on acts of resistance to professionalism lapses, making sense of their moral position and the development of their professional identities, by encouraging others to also resist through sharing resistance narratives, and finally, by altering the professional conduct of their seniors. We encourage all workplace learning stakeholders to better understand the social dynamics of hierarchies and resistance and to encourage the enactment of resistance in the face of professionalism lapses in order to protect the health and wellbeing of learners and patients.
Depression in a depressed area: Deservingness, mental illness, and treatment in the contemporary rural U.S.
Claire Snell-Rood, Elizabeth Carpenter-Song
People with mental illness face public scrutiny that provokes questions about their ability to cope, membership in society, and entitlement to state support. Less attention has been focused on how such scrutiny occurs at the community level, particularly when shared economic distress has generated a high burden of poor mental health. We employ theorizations of health-related deservingness to examine the local moral economies through which residents of an economically depressed area question who deserves to be depressed, how those with depression should cope, and what forms of treatment are sincere. Drawing on a multi-phase study (2014–2016) in Appalachian Kentucky, we analyze interviews conducted with women with depression and the health practitioners who work with them. In the rural U.S., the dim economy and scarce healthcare resources are attributed to exclusion from broader society. Naturalized as a moral response for enduring dead-end jobs and poverty, participants described how depression coping can positively demonstrate individuals’ commitment to providing for their families and mobility. However, when individuals are perceived to use depression diagnoses to access state entitlements or obtain medication as a “quick fix” that facilitates substance use, area residents question the veracity of symptoms and argue that treatment-seeking is insincere. In this way, rural moral concepts about work, entitlement, and self-sufficiency become embedded in contemporary ideas about mental health and its treatment. The tempered normalization of depression may offer possibilities for decreasing stigma and engendering conversations about patterned exclusions of rural Americans from broader U.S. prosperity. However, tense moral meanings about depression coping reveal both deepening and emergent social inequalities within rural communities. Attending to local moral economies that shape mental health deservingness is critical to understanding the complex overlaps and intersections between state, community, and family discourses.
The ineffable: A framework for the study of methods through the case of mid-century mind-brain sciences
Laura Stark, Nancy D Campbell
Conventionally, the story of modern research methods has been told as the gradual ascendancy of practices that scientists designed to extract evidence out of minds and bodies. These methods, which we call ‘methods of extraction’, have not been the exclusive ways in which experts have generated evidence. In a variety of case studies, scholars in Science and Technology Studies have persuasively documented scientists’ efforts to know the extra-linguistic, internal experiences of other beings – prior to or aside from their efforts to represent those experiences in words and images. We propose a new framework to resolve a seeming contradiction in STS, which stems from the fact that the language of ‘subjectivity’ has been used to refer to two analytically distinct features of scientists’ methods: the epistemological premises of a method, on the one hand, and the evaluation of the method in the moral economy of science, on the other hand. Building on Shapin’s provocation to study the ‘sciences of subjectivity’, we analyze three sites in the epistemic niche of 1950s US Federal mind-brain scientists and find that ‘methods of extraction’ neither replaced nor invariably trumped additional methods that researchers designed to provide evidence of people’s interior experiences. We call these additional approaches ‘methods of ingression’ because researchers purported to generate authoritative evidence by climbing inside the experience of another being, rather than pulling the evidence out. Methods of ingression and methods of extraction coexisted and developed iteratively in dynamic relationship with each other – not in isolation nor in competition, as is commonly assumed. Through this empirical study, we provide a new framework that departs from the binary framework of objectivity-subjectivity to allow scholars in STS to more aptly describe scientists’ epistemic worlds; to discern a greater range of methods at play; and to appreciate the warrants for knowledge used in our own field.
In recent years, various levels of the Chinese government have undertaken the task of developing new models of community-based mental health services. Greater availability and higher quality will not result in substantial improvements if those suffering from mental illnesses do not use the services. This article examines not only people’s cultural perception of mental health and help-seeking but also their practical concerns and preferences about mental health service provision in urban China. The study analyzes qualitative data from in-depth interviews with 50 respondents who belong to the most psychologically distressed subgroup (with the Kessler Psychological Distress Scale (K10) score ≥ 25) identified in a household survey in Beijing. While stigma about mental illness and help-seeking is real and well described, most interviewees are also not aware of the availability of professional mental health services. They believe that professional services target the upper-middle and upper classes, and are outside the sphere of their daily life and socio-economic status. The interviewees do not welcome the prospect of a mental health clinic or treatment center in their neighborhood due to concerns about stigma and confidentiality; instead, they support the creation of mental health referral services and promotion programs within the community or on the Internet. The findings suggest that the development of community-based mental health services in mainland China should take into account not only the cultural constraints that make people reluctant to seek professional help but also the structural inadequacies that deter potential user groups from accessing such services.
Beyond two worlds: Identity narratives and the aspirational futures of Alaska Native youth
Lucas Trout, Lisa Wexler, Joshua Moses
Indigenous communities across the Alaskan Arctic have experienced profound revisions of livelihood, culture, and autonomy over the past century of colonization, creating radical discontinuities between the lives of young people and those of their parents and Elders. The disrupted processes of identity development, access to livelihoods, and cross-generational mentorship associated with colonialism have created complex challenges for youth as they envision and enact viable paths forward in the context of a rapidly changing Arctic home. In this study, we consider the meanings associated with different constructions of culture and selfhood, and the ways in which these identity narratives position Inupiaq Alaskan Native youth in relation to their personal and collective futures. Through an intergenerational and participatory inquiry process, this study explores how representations of shared heritage, present-day struggles, resilience, and hope can expand possibilities for youth and thus impact individual and community health.
Vietnamese-American family caregivers of persons with mental illness: Exploring caregiving experience in cultural context
Quynh Nhu (Natasha) Bui, Meekyung Han, Sadhna Diwan, Tran Dao
While involvement of family caregivers can play an important role in the recovery process of persons with serious mental illness (SMI), family caregivers often endure poor health and mental health issues due to caregiving-related distress. These challenges may be exacerbated for Vietnamese American families due to cultural values (e.g., familism and stigma). This qualitative exploratory study examined how Vietnamese American family caregivers of persons with SMI describe their caregiving experience. Using convenience and snowball sampling, the study recruited 21 participants who took part in two Vietnamese-language focus groups. Key findings of the study addressed three themes: (1) the influence of cultural and religious values on caregiving and mental health; (2) the negative impact of caregiving on caregivers’ wellbeing; and (3) the stigma attached to mental illness. The study offers useful insights to assist mental health practitioners in tailoring culturally appropriate and effective services for Vietnamese caregivers.
Training the Porous Body: Evangelicals and the Ex-Gay Movement
In this article, I examine how US evangelical opposition to LGBT rights stems from a unique understanding of sexuality and the person. As my respondents explained to me in over sixteen months of field research, evangelical rejection of LGBT individuals and practices is rooted not simply in prejudice but also in a culturally specific notion of personhood that requires Christian bodies to orient themselves to the divine. In evangelical Christianity, the body, along with its capacity to feel and communicate, is understood as a porous vessel receptive to communication with God. In contrast to a dominant idea that sexual orientations shape individual identities, sexuality within this religious world instead facilitates the movement of moral forces across individual bodies and geographic scales. Sexual desires and sexual acts are broadly understood in evangelical cosmology as communicative mediums for supernatural forces. This understanding of sexuality as a central component of moral agency shapes widespread practices of ostracism of people who identify as LGBT within evangelicalism and often leads to anti-LGBT political positions. Claiming an LGBT identity is seen as making one a distinct kind of person incommensurate with evangelical porosity.
According to professional understandings, American Sign Language (ASL) interpreters provide language and communication access. This article draws on ethnographic research and interviews with ASL interpreters in the United States to analyze the category of “faith-based” interpreting in relation to “professional” or “secular” interpreting. Through such a comparison, and through attention to the ethical, linguistic, and communicative practices of faith-based interpreters, this article explores the stakes of foregrounding the concepts of access and agency in the context of disability. The concept of disability access is tethered tightly to secular epistemologies that deny the possibility of differential, distributed, or divine agency as well as forms of mediation that are not focused on language or communication. In centering principles of equal participation and inclusion, and the need for interpreters to have linguistic skills and specific orientations toward deaf people, the field of ASL interpreting has ignored a range of skills and competencies that exist outside the realm of the secular. Through an engagement with scholarship from disability studies and the anthropology of Christianity, this article argues for attending to and valuing extralinguistic forms of interpretation and the need for more capacious understandings of access and agency in the context of disability and beyond.
Outliving Death: Ebola, Zombies, and the Politics of Saving Lives
Treatment units were created all across the country with a mission to save lives when the Ebola outbreak hit Guinea in 2014. These units were exceptional sites of biomedical and biosecurity technology. Nevertheless, the concrete procedures to contain the virus reduced the people quarantined to dangerous bodies. The emergency therefore created zombies, haunting figures trapped between life and death. The figure of the zombie shed light on the failure of the humanitarian engagement: when humanitarianism was driven by an ethical imperative of saving lives at any cost, its concrete procedures failed to preserve political and social existence. Zombies also related to the legacy of the slave trade. Connecting the zombie with the postcolonial context of Guinea, I will argue that humanitarian teams were dealing with already devalued lives. Zombies is then another word for pariah citizens of a global world. But people never live in utter subjection. The zombie is thus not only a metaphor for the commodification of life. It also invokes a slave rebellion. Enduring the politics of saving lives, zombies nevertheless resisted the confinement: to the quarantine but also to our analytical gaze. Zombies are thus the ones who outlive not only death in life but also conceptual death.